Nan Mustard's Recovery

This blog is a record of Erin (Nan) Mustard's recovery.

Wednesday, October 31, 2007

Another traumatic day!

It started pretty scary, as we brought Nan down the stair chair and she stood up suddenly the floor was covered with blood and their was blood on the stair chair seat. We hurried her to the recliner and when she stood from the wheelchair there was blood there too. What was going on? We called Terry and she said it was something that just might happen. Nan and Marilyn began to remember when they had the ostomy bag off yesterday changing it and had noticed a spot next to the stoma which looked like dried blood. After a few minutes there was no more fresh blood and Nan began to settle down. It is highly unnerving to see so much blood coming from someone you love. We looked closer and it appeared that the blood was coming from around the stoma, we are still not sure this evening. The wound care nurse is coming tomorrow morning and will change the bag and then perhaps the truth about where the blood came from will be known.
After a solid dose of Adavan Nan fell asleep and relaxed a bit. I sent an email to Boston asking questions about our new drug. Seems the drug company had only given us enough for a 200 mg dose per day and the usual dose is 800 mg. Dr.Morgan was so kind and responded nearly instantly confirming that she should start the drug immediatelly and that the dosage should be 800 mg. So I called our oncologist, spoke to Alice and found out that the doctor has only ordered 200 mg. I forwarded the Boston emails to her email and later in the day she called to say the drug company would be shipping out more drug to us tomorrow and the correct dosage was to be 800 mg. Another crisis averted! So about 2:30 today Nan took her first Nexavar pill and this evening after all the details were cleared up took two more pills since we know more are coming soon. We are very thankful to all who have worked so hard to make this happen so quickly, especially Dr. Melynk and Dr. Gainey and Alice.
Nan has had a low key day with a high point. keanna came to show Grammy her outfit, she was a Strawberry Shortcake girl, so cute and adorable. I'm reporting what I was told. I was out shooting photos and missed her and Nikki. Bummer.
Dana had candy ready at the door and LeAnn was kind enough to bring us a sack of candy for the many trick r treaters who came to the door. Thanks LeAnn for your thoughtfulness. Yes there were many and we used the honor system, left a big bowl out front and amazingly there is still some left in the bowl.
Nan is ready to go up now and I'm sure she is thinking just like I'm thinking, is this same place going to break open again and bleed when she stands up and moves about. I sure hope not. We got our new shipment of supplies, TPN, Dilautid, Adavan, needles, and many other items. Delivered to the door at 8:45. Star was very willing to welcome him with loud barking and her usual rude self at the door. I asked for and received hydration for Nan for the next 7 days. We had low output last night from her kidneys and I want to see if we can increase that with some extra fluid. Pump is working well today, Nan has had some pain and has slept most of the day.
Dana is beginning to consider returning home as she has duties both at work and at home to care for. She has been a doll, a cook, a cleaner, a good friend and most of all Nan's sister and has catered to her every need. She was there this morning when the blood hit and jumped into action. These two ladies are amazing in what they can do to help Nan feel better, to laugh a little and to help her pass the time.
Carol, Nan will enjoy hearing the music when it arrives, thanks so much for thinking of her in this way and for the signed case at that.
Well I think this day has been long enough. In a few minutes we give the last antibiotic and then hope that the fevers and infections do not return.
We wish Barbie and Gerry well as they travel to Hawaii. Hard working people who have lived their lives carefully deserve to enjoy their retirement and I am so glad they are doing it right.

Please pray hard that the Nexavar will work in Nan's body to reduce the tumor masses. Pray that she might feel better and be able to enjoy life more.
We love you and we thank the class of 1967 for their donations to the recovery fund. The money was deposited to the fund today to be held until a special need arrises. Thanks so much each and every one of you.


tim and nan and dana and marilyn

Tuesday, October 30, 2007

Nexavar arrives

Dear Family and Friends,
10 pm and the ladies are watching House or were at least. Thanks to the kindness of members of my high school class I purchased a new device that holds water and allows Nan to have her feet in circulating and warmed water. Marilyn and I ran in this evening to a Linens N Things and found it on a 1/2 price sale. Nan has long wanted it and she smiled when she woke to find out she now has one.
Nan had a decent day with some awake moments and others deeply asleep. I left at 11 today to see two properties in SF, then back to the DMV to renew my license, then Longs for meds, Jeans to drop off files to write up, then home. I found that Nan has had some bouts of nausea today, same as yesterday. The pump is working well at pulling unwanted liquid out but we are still dealing with nausea.
Mid morning the new meds were delivered by UPS, 14 pills for 14 days at 200 mg per day. Now I'll write to Boston for advice re: how soon and what goes well with it and what does not go well. We are indeed very thankful that we will have a chance to give Nexavar a try.
This evening I got a chance to catch up with Nikki and Keanna for a moment before she went to her swimming lessons. What a sweetheart, I'm wearing a sticker she shared with me. Its always an up event to get to see my girls.
Carol Peden called Nan this morning from Dollywood in an attempt to let her listen to the Kingdomaires, a southern gospel quartet who are a fixture at Dollywood. Unfortunately Nan had just had Adavan and was zonked so could not stay awake long enough to listen. Thanks Carol for trying. So glad you got a day away to rest up and relax. Carol and Nan both enjoy Dollywood very much and have spent many happy hours there over the past years. Nan misses going to Dollywood so much, actually she misses going anywhere these days.
We have not heard back yet about her blood work on monday. Sort of thought we would have heard back by now. That is the gauge we go by to know if things are holding steady or not so its important to us.
Thanks for praying about the suction and I think that prayer has mostly been answered. Right now we need guidance regarding the new drug and for it to work well for Nan. We have placed our faith in God and trust that He will do the Right thing for Nan.
We send our deepest love and appreciation to each of you this evening. We are reminded daily that we are not alone by your many ways of expressing your care.


tim and nan and marilyn and dada

Monday, October 29, 2007

Very subdued

Dear Family and Friends,
10 pm here, we took Nan up at 9 and on the way suffered our first disaster. At the foot of the stairs where Nan moves from the wheelchair to her stair chair we have a normal routine where I roll up beside the banister, Nan reaches up for the knob on the top of the banister and pulls herself to her feet and using it as a point of stability turns and sits down on the stair chair. For some reason we did not do that tonight and her knees buckled and she slowly went down, all the way to the floor, fortunately it was slow and I never really lost my grip but neither could I hold her up with my arms extended. Looking back we know how to do it better and safer but it was very traumatic for Nan and she was breathing very hard by the time she got to bed. She received a bruise on her knee and that is all the damage we know of so far. I've been listening to the monitor and the girls stayed with her and they watched Deal No Deal and now an interview with Martha Stewart. Nan sounds pretty good but is coughing some. She definitely has settled down now and is resting well, warm under her blankets.
I'll take the TPN up in a few minutes and replace the batteries in both pumps.
Terry came early this morning, 7 am, to do vitals, draw blood and assess Nan. She had a huge day planned and we were glad to see her. Around 8:30 we brought Nan down to her recliner where she tends to be more comfortable than upstairs. The suction is working much better now, we seem to have gotten thick stuff out now and we are doing better. This morning the pharmacy called to say that the 14 days of the new meds would be arriving tomorrow. They will appeal to the insurance company, that appeal will be lost, then they will give us another 14 days and then the word is that Bayer will offer the drug free to Nan.
Our fervent desire is that God will see fit to allow the drug to stop tumor growth, then shrink some of them reducing the terrible pressure Nan feels all over her tummy. We are humbled and grateful for the help rendered to us by people we don't even know and by the help at the doctors office, especially Alice.
Dana made breakfast today, whole wheat pancakes, fried egg, vege bacon, orange juice. Wow!
These two ladies are such a delight to have here and I know Nan deeply appreciates having them with her.
Nan has been emotionally down the last couple days. She speaks of being afraid all the time and I can see it in her eyes. She knows she is in a time of high risk and it gets to her. Thanks Mary for coming to visit today, it was the first thing she told me when I got home from my day, Mary came! All three ladies enjoyed visiting with Loree also, Loree came to pick up files for work and came in and visited with the crowd. Thanks once again Loree for all you have done, we could not have survived the last 18 months without your help.
I inspected two homes, a day of death for estate purposes one in Antioch, lovely spry lady and then on to Antelope, (Sacrament) to see a home which has sold for about 100K under market. It was bank owned and the bank decided to cut their loses and dump it. Nice place. Then to Applebees for a quick vege pizza Dolly introduced me to, then a sleepy trip home. As I started out of Sac I called Nan's cell and she answered with so much power it took me back for a minute.
Now its time to wind it down and try to get some sleep. Last few nights we have to get up at point in the night to have Nan sit up to stretch her back out, then its back to sleep again. Tonight the antibiotic has to be given at 1 am.
I enjoyed reading the messages to the blog today. I also received a letter from Judy, a friend from the class of 1967 at Laurelwood. They just had the 40th reunion and several friends sent checks for the music they picked up from my old album. I was shocked by the generosity of people I have not seen in years but I remember them all fondly. What a great time of life, the teen years at Laurelwood. Thanks Judy for remembering us. Can't wait to see the photos of all the young people!!

Please keep Nan in your prayers and good thoughts. The last several months have been an ordeal for her with little joy, intense pain and a general fear of losing this courageous battle. She needs our love and prayers. I know God can do all things and we would love to have her well enough to travel so she could visit the valley and Sharon's new home, N. Carolina and even Dollywood. However we are prepared to accept God's will and His working things out.

tim and nan and marilyn and dana

Sunday, October 28, 2007

Calm Sunday

Dear Family and Friends,
Well its 7 pm on Sunday night and this has been a calm subdued day. The ladies are watching the world series and I'm working in the office. I've just had a very good piece of apple pie and I'm sipping a hot drink. Dana brought pizza home this afternoon and because it was thin crust it had no calories, nice!
Nan had a decent night but woke in the middle of the night and ask to sit up, so we sat her on the edge of the bed for awhile and the reluctant suction pump began to pull our material that needed to come out. She sipped some water and that came through as well. When she laid back down the drainage stopped working, yet all in all we got over a half a canister out during the night. We used Adavan a couple times to help her sleep but at 7 this morning she was awake and ready to get up and move downstairs. So we woke Marilyn and got ready to start the trip. Once again nan grabbed the handles of the walker, stood and walked the many steps to the stair chair. When she settled into her chair she fell back asleep after the hard workout. She has had some bouts of nausea today but the pump has been doing a better and better job of pulling the fluids out. During the night Nan asked for and was given hydration just to add a bit of fluid to her system. Today she has had times of waking and times of sleeping. Dana went shopping for a while and visited Nikki. She found many many cans of some good ice tea and fruit drink for a very good price. She also found something very cute for Timothy's first Christmas and was so delighted with her find.
I've been using the time to write appraisals and to work on getting more organized, it takes time to recover from two weeks away, things tend to stack up even if we are very slow in the new order department.
Nan's spirits are decent in light of not feeling very well a lot of the time. Her stomach hurts especially when she drinks anything. I feel that the Lord is gradually answering our prayer for the suction to work better, certainly it is better than 24 hours ago. We are anxiously awaking the morning and a call we are supposed to receive from a pharmacy connected with Bayer Drug. They will be telling us how the Nexavar will be delivered.
Nan has enjoyed several phone calls today, Tanya from New York called and her calls are always so upbeat and encouraging, Irene called and let us know that for sure her surgery was set to happen soon. Pam called on her way to her school to try to get ahead of the surge tomorrow.
I'm back after a break, Nan is having burning pain this evening near the fistula and nothing seems to be dealing with the pain. So I just gave her a low dose of Adavan which may carry her until time to go up to bed. Terry will be here in the morning at 7:15 for her weekly vitals and blood draw.
It is an interesting mix of personalities here at the house. Dana does a great job of keeping things moving including meals and DVDs. Marilyn has become an excellent care giver for Nan and watches over her like a mother and child. I help with meds, moving Nan about, night duties, anything else Nan needs or wants from me.
So now its time once again to wrap it up.
In summary we have had a decent day, Nan would say not so good but it seems we are holding our own right now. We eagerly await the call re: Nexavar tomorrow.
Can we get you to pray once again for Nan's special situation. She has lethal tumors that need to be reduced or at least stopped in their tracks, she needs some relief from suffering and she needs courage and peace.

tim and nan and dana and marilyn

Saturday, October 27, 2007

Nan walks, Timothy visits, We hear a sermon from Loma Linda

Dear Family and Friends,

As I write this evening and sip my mocha the world series is being played but this year our real challenge is much closer. Nan took a literal huge step forward this morning. During the night she accidentally spilled some ice chips on her gown and cried out in surprise. In a few minutes we had a dry gown on, the wet sheet gone and went back to sleep. That was the only time Nan was awake all night. At 7 this morning her back hurt so badly that she needed to get up so we got ready to help her make her way down. Marilyn and I rolled the walker with wheels up to the bed where Nan was sitting expecting her to stand, pivot and sit on the walker, she said it was too hard to sit and stood up, grabbed the handles of the walker and walked her 25 steps to the stair chair, no knees buckling, no hesitation. We were shocked and so proud of her accomplishment. She rode down and then stepped into the wheel chair on her own. We helped her settle into the recliner and for a bit the suction worked well drawing out contents of her stomach and GI tract. She took some Adavan and rested for quite some time before waking to ask if we could watch a church service on the Christian channel. We tuned in just in time for the Loma Linda Service which was full of good music, good preaching (about sex no less) and then more good music. Dana was busy making a wonderful lunch. Keanna had spent the night and she was such a wonderful addition to the mix. She had breakfast that Dana prepared and then Nikki came to whisk her away for a day at the Oakland Zoo with her mommy and daddy. After Keanna left it grew quiet and we all took naps.
Mid day we got a call from Jason saying they would be here in a couple hours. We could hardly wait. Timothy had just woken up and was in a good, cute mood. He and his grammy exchanged smiles and giggles, the fed him, they posed him for photos and we all took turns holding him. With Dana, Marilyn, Jason, Jo, Nan and me to enjoy him he was the center of attention. I have included photos of the visit but unfortunately I missed Nan when she was smiling and laughing.

I do not mean to suggest that these are easy days for Nan. She is weak, troubled by the tube not pumping correctly, has some pain at times and still does not feel really great. On the positive side her voice is stronger, she is resting better at night and she really showed her new stuff with that walking this morning!

Nikki was with us last night when she brought Keanna and then more this morning. She is such a positive force and interacts with both Dana and Marilyn perfectly. How we thank God for our children. I never intend to suggest that somehow our kids are more precious than yours, I just know how precious they are to us and how much their faithful and positive support means to us.
A little while ago Pam appeared with pies even including an apple pie for me with no sugar but it sure was good. Thanks Pam for your willingness to drive all the way over here in the dark to be with Nan.

This Sabbath has meant REST, real shut your eyes style rest for all of us. The days of going to bed at 9:30 and climbing out at 6 with uninterrupted rest are not with us at this time. But we have the honor of caring for a grand lady, a lady who does not know how to quit or stop living life to the fullest.

We are deeply grateful this evening to each of you who have had a part in this wonderful saga, a story of courage and inspiration, of quiet faith and iron will, of tender love and quiet acceptance of a wrong so awful that in lessor persons might cause bitterness. Nan does not deserve what she endures but does not complain about it either.

We thank you for your prayers and we ask that you pray for the quick delivery of the new drug, for the suction to begin working better and for Nan's strength and comfort level to increase.

We send our love and deepest appreciation for your help in all ways.

tim and nan and marilyn and dana and pam

Friday, October 26, 2007

Nan faces the challenges of being at home...

Dear Family and Friends,
Since I last wrote a lot has happened here. We went to bed last evening shortly after I wrote the blog message but did not fall asleep until 2:30 in the AM. Nan was restless and experienced something that we have seen before, the different bed with a flat surface instead of the adjustable bed at the hospital. She was restless and nauseous but was not in a lot of pain. She made the transition from recliner to bed with remarkable strength considering she had been in bed for nearly two weeks. We discovered that the stomach suction was not functioning well. So over and over again I injected small amounts of water into the tube in hopes of dislodging the jam but to no avail. At 2:30 I gave her a second dose of Adavan and she went immediately to sleep and did not wake until 6 am. I had to give her antibiotic at 3 but was able to rise, prepare the little bottle, hook it up to her arm without waking her at all. We tried to reach Terry during the night but found only an answering machine. Nan asked to go downstairs knowing that often when she moves about the blockage in the tube passes so we waited until we heard Dana up and then Marilyn also heard us and we helped Nan go down to her chair. As soon as we sat her in the chair the suction began to work and pumped several CC's of fluid out but then stopped and only worked on occasion during the day. She has had nausea several times and we've used Zophram. We have also helped her sleep with small doses of Adavan. The Dilautid pump appears to be working perfectly and yes sometimes breakout pain happens but mostly the pain is being controlled pretty well. Dana has been cooking and having food odors in the house is new to her and she has had to adjust to that a bit. Marilyn has been right beside her all day and when Nan sleeps then Marilyn can catch some winks as well. Nan is fully alert, has a stronger voice but does not feel all that well. She has had a good day really considering all things.
This afternoon Julie, our favorite wound care nurse, came to see Nan and to change nephrostomy dressings, do the tummy wound and assess Nan's needs. PT will come next week.
This morning a call came in from Reach, the working arm of Bayer that handles Nexavar. The nice lady said that a 14 days treatment had been approved, that they were going to appeal the insurance decision not to pay during the time and if the insurance continued to decline they would cover another 14 days and then probably cover the entire cost of the drug due to our low income level in 2006. When Nan woke I was able to give her the good news, she was delighted. Alice from the oncology office also called to confirm the same information. These people really work hard to help.
Dana has fed us 3 meals today and tonight's was great, lunch was whole beans and corn bread, very excellent.
I have tried to use the time I had to try to catch up on important work at my desk. I have stayed tied to the desk as well as I could and accomplished a lot. I have such considerate clients who all ask about Nan when they call.
This evening we have Keanna for a sleepover and she loves to watch DVDs with Dana. Just before dark we went to the park, walked the dogs and enjoyed the dusk time. Now Keanna is heading to bed and will be sleeping in her own bed in Dana's room, how special for her.
This morning due to the luxury of having Marilyn here I went back up at 7:30 and slept until 9:15 as I had very little rest last night. It is hard to explain what a relief it is to have Marilyn with us. She is no shy flower but speaks up, learns the medical things we do for Nan and helps keep track of what is happening and when. She is a huge help to us. Having Dana here means we get to eat and have a variety of meals which are all professionally prepared and very good. She misses her husband Ronnie and they talk often.
This has been a week of challenges and small victories. We are very thankful for an excellent medical facility like John Muir, for the safe if bumpy trip home and to get the chance to be home again. We seek God's hand in keeping the suction working for Nan's comfort, for the speedy arrival of the drug and for God protecting hand over all.
We are thankful for the Sabbath hours which means no work, rest and fellowship. How precious it is to not be alone but to be surrounded by love and help.
So this evening as we enjoy the blessings of being home we encourage you to also be thankful for your home and family. The greatest blessings are the ones closest by, the ones we tend to overlook until their existence is threatened. Love the one you are with... listen to them, care for them and treasure them.

tim and nan and marilyn and dana and keanna

Thursday, October 25, 2007

Home again

Dear Family and Friends,
Its 8:30 and we are home. The day had many ups and downs like usual for us. We had a good night with few interruptions. I left this morning at 7:40 and drove to San Jose through traffic, did an appraisal of a townhouse and then got a call from Alice at the doctors office. Insurance had denied payment for the new drug. So as I walked around in a condo project thinking about how I would pay for the drug, then back to the car and I started to drive another call, this one from Reach, the pharmacy that handles Bayer's meds. The lady could not have been more nice and let me know that due to our low income the entire cost of the meds might be covered. She said that probably a decision would be made by Friday evening or Monday morning. Our friend at Dana Farber in Boston had also contacted Reach and confirmed that with the financial information in hand, faxed by our trusty tax man at just the right moment a decision would be reached quickly. When the drug will be in our hands is not yet for sure but at least things are moving the right way it seems.
On my way back to Concord I called Nan and was connected to Peter, the discharge planner at the hospital. He confirmed that we would be leaving at 2 pm and that Nan would be brought home in a medical transport with a crew of EMTs. Promptly at 2 they came in, two very good looking strong young people who quickly loaded Nan into an ambulance and we were on our way. The girl drove fast and carefully but took the longest way home, oh well, we are home now. Marilyn and Dana each drove a vehicle home as I rode with Nan and cared for her. The hospital crew was so nice and supportive and wished Nan well as we left.
We came home to find the medical supplies were being delivered and at the front door. I quickly unloaded them and we called Terry, our nurse who came over and instructed us in taking care of all the medical systems. At this point we have TPN, Dilautid pump, Adavan, Zophram, Lovenox, AMN107, Aciphex and ibuprofen when needed.
Nan is resting in the recliner and is mostly pain managed although some pain creeps through. She is about to take her AMN and then we will head to bed. We will use the ramps, the stair chair, the walker as a wheel chair upstairs and then the comfortable bed. The hospital bed on the first level is so awful that sleeping there is unthinkable.
This evening after we got Nan all settled and resting Dana made dinner including pumpkin pies, how nice to eat at home after trying to find something to eat for the last 2 weeks away.
Tonight we once again count our blessings, in the face of the condition Nan faced when she first into the hospital she is once again home and doing much better. However Nan is weak, tired and has limited ability to move about. She needs our loving care which we are happy to extend to her.
We thank God for the blessings of this day and for a safe transit home, for a warm and comfy home to come to, for family and friends to help us, for each new day we have to enjoy one another. We hope to see Nikki and Keanna tomorrow evening and have talked to Jason a couple times today. We look forward to seeing Mary and Pam and deeply appreciate the help LeAnn, our wonderful neighbor has given all the way from helping me load Nan into the car two Friday's ago to caring for the creatures and home while we have been gone. What luck that we would have such solid, caring neighbors.

Please pray that Nan will be given just the blessings she needs tonight and tomorrow. We all treasure this precious lady and are inspired by her courage, her faith, her love.

So from our house to yours,


tim and nan and dana and marilyn

Wednesday, October 24, 2007

Dana arrives, Nan sits in her chair for 30 minutes but this evening a new fever hits!

Dear Family and Friends,

It is high energy level right now in the room, Marilyn is lamenting Boston's win tonight, Dana is excited about arriving and when we got to the room Nan looked flushed, I checked her temperature and it was 101.8 so I've let the nurse know. The nurse has not come in yet but we have a cold cloth on her head, this could change our plan to leave tomorrow if she spikes a new high fever. We've had no substantial fever for the past 6 days so this is a setback and disappointment.

Today has been a pretty good day. Our world moves around the 4 hour clock. Every 4 hours Nan can have a new shot of Adavan which she really looks forward to. It allows her to sleep and rest because the pain does not ever go totally away. At noon they came from PT and helped her stand up, do extensive exercises and then sit in her wheel chair for about 30 minutes. By the time she got back to the bed she was very ready for Adavan, tired worn out and ready to sleep. I was so proud of her and I have a photo of her in her chair while she was getting her hair done by the aid. She rested during the afternoon with some breakthrough pain.

I have been in place here in my little hospital room office and managed to get quite a bit of work done. After paying the data card bill this morning then it seemed the service got much quicker. I have worked all day using this computer and the one in the office at home.

Now Dana is preparing to drive to the house. Her back is so bad that she cannot sleep on our less than ideal sleeping devices. She will come back tomorrow morning and that way get a good nights sleep. Now Marilyn and I are wondering if she will really remember the way home. This is a bad time at night to be lost. So we cross our fingers that she will be safe and sound. I do know this, our little doggies will sure be happy to see someone come spend the night.

Nan has fallen asleep now and is deep in rest. Every day seems to bring a little more wake time and a little less pain and suffering. We are promised that at home we will have Terry our nurse, a PT person and any other support help we need. The hospital team that discharges patients is already working on the details and covering every possibility in advance. We have not yet decided if we will take Nan home in the van in a reclining seat or opt for a medical transport vehicle. Nan is leaning toward going home in the van but she will make that final decision tomorrow.

We have heard nothing about the new drug yet, at least that means we have not received a big no. I am so looking forward to introducing the new drug in hopes that for Nan it will reduce tumors. Let me be clear, I am in no state of denial here. We hope it helps and we know full well that this drug does not help all that take it. Yet we feel it is better to try the drug than know that it exists and make no effort to obtain it. That would not be the spirit we have approached Nan's GIST from day one. We have taken advantage of every medical option, have traveled, have researched, have done everything we could do to hold onto life and we have enjoyed a great deal of life due to the quest.

Today we received a very nice email from Glen and Joyce Conner, long time friends. Their life has not been easy and Glen has some rather quick gall bladder surgery and is now feeling better. No matter how sure we are that things are OK, we never know what happens next. Bob and Carrol had a shock with Carrol's knee suddenly giving way. So far the tests seem to suggest that there may be a reasonable fix yet it was a shock and reminder of how precious and tenious life is. Like the flicker of a candle in a wind storm. So Mighty Heavenly Father, please keep us close to your heart, especially hold Nan close this evening and if its within your plan give her healing, give her health, trust her with your healing power and might.

Our roses given to us by the Wants remind us that as they open and bloom so does God lead each of us to open and bloom to those around us, a kind word, a smile, a touch, a selfless act. I find this to be a crazy world filled with angry rushing people all around and sometimes I long for the quiet of the country, to hear the wind blow in the trees again, to watch the moon rise, to see waves on the seashore as they endlessly come and go, come and go. I long to do anything with Nan again, a ride, a meal, a walk, a quiet moment without pain and stress, I know you understand.

So as we possibly transition to home again we appreciate your prayers, your concern, your caring. For us it is a dream come true, to be able to go home yet once again.

We send out our love to each of you and thank you all.

tim and nan and marilyn and dana

Tuesday, October 23, 2007

Nan steps out, sits in wheelchair, pleases PT hunks

Dear Family and Friends,

As the evening is winding down and one has time to reflect certain thoughts come to mind. Today we said a reluctant goodbye to Sharon as she flew home this morning, we witnessed Nan encounter the PT guys who gently helped her to her feet, take some steps and then sit in the wheel chair for 10 minutes. Others were ready to change her bed and tidy her up at the same time. Then she got back into the bed at noon, took Adavan and slept for awhile. She deserved it. At this point the game plan is to be able to take her home on Thursday. Both doctors are working toward that goal and ordering those things Nan needs at home. The biggest hurdle is the Dilautid pump. We have heard differing thoughts on the ease of getting that at home. So another bridge to cross. We have had yet another day without fever and she has been awake some in spite of some limited pain moments. She is very aware of what is happening but due to the high levels of Dilautid from the drip she is not totally out of the fog at all times.

Good news on the horizon, Dana arrives tomorrow evening at 6:40 in Oakland. She says she always comes with stitches in her hand and that seems to be true. We will be so glad to see her. Nan just got to talk to her for a few minutes. It seems so good to have Nan be able to use her phone again even though she is a bit weak and tires easily in the process.

We got a call from the doctors office to tell us that they have done all they can to get the drug Nexavar and are waiting now to hear back. We don't want to wait obviously but it is beyond our control so we wait.

It seems a bit unreal, this world we are now living in, staying at the hospital with only an brief stop at the house once in awhile. Grabbing food where we can for the best price we can find, sleeping in short segments at night in less than ideal conditions, hanging on every word the doctors say and hoping for the best in all circumstances.

Please remember Nan in your prayers this evening. She has battled back from being very ill to just being ill, its real progress.

Our hearts go out to Roger and Carols daughter who is having yet another leg surgery this Friday, a surgery which will mean she is on crutches for the next many months. She needs our prayers too.

love from room 3117 where the Roses are blooming out and are beautiful, where the temperature is about 60 degrees on purpose, where reruns dominate the day and where Nan demonstrates daily courage.

tim and nan and marilyn

Monday, October 22, 2007

Stable day, longing for home

Dear Family and Friends,
Nan had a decent night with only a few bouts of pain beyond control. She woke this morning without a big fever and had a bath, PT came and helped her stand up on her own weight, all the other doctors were there too, no word today on the new drug. Our oncology group did not get a call back from Bayer yet so its pins and needles as we wait. The Dilautid drip seems to be helping control the pain and along with Adavan every 4 hours she is pretty comfortable. What an enjoyable time it has been with Sharon and Marilyn there to help encourage her, to listen to her and to help her when she needs to move in the bed or needs new ice water or needs to see a nurse. Sharon has been sleeping in the portable recliner and has found positions to sleep that I would never have thought of while Marilyn has claimed the family room next door and a couch. Our room is very cold, better for nan that way to stave off fevers but the rest of us are cold, well that is except for Marilyn who does not seem to be touched by the icy temp.
I came home about 4 to try to get some backwork done and have been successful but now its 9 and I'm just getting ready to head back to the hospital for the night. Nan wants me there and that settles that issue. Marilyn and Sharon each have a book and when nan sleeps they read or watch reruns. Sharon gets many phone calls since she does run a very successful business back home and Rick is caring for it professionally while she is gone.
We lose Sharon tomorrow as she has to go back to face little things like collecting the money for her home which she just sold, making sure the builders are doing the new house right and she does have those neighbor dogs to wrestle with on a daily basis. We have appreciated her quick trip so much and Nan has reveled in her love and attention. There is no one like Sharon in the world, she is a very special loving person.

So now its time to wrap this up and head back to Concord. Doctors are making noises about Nan being released in the next couple days. We have to make sure we have a way to handle the pain before she comes home and the doctor was looking into that today. She is very tired, weak but determined and still very much in charge of her life. We are all so proud of her and just love her to much hour by hour.

Please pray that the Lord will spring the Nexavar from Bayer, that it might help and that Nan can yet enjoy some quality of life again. Most of all pray that God's loving will be done.


tim and nan and marilyn and sharon

Sunday, October 21, 2007

Moving forward

Dear Family and Friends,
Interesting day! It has been so special to have Sharon and Marilyn here with Nan today and last night. These dear ladies slept in terrible conditions last night just so they could be near Nan and Sharon was up with her several times during the night and got very little sleep. Marilyn ended up sleeping under a spotlight which could not be turned off. But she did not confess...

Today Nan has been given a dilautid drip and overall it seems to be doing a slightly better job of dealing with the pain than the prior 2 hour method, certainly a lot less attention from the nursing staff this way.

Marilyn and I drove cars to Discovery Bay today, I worked and cleaned up after the doggies, repaired (sort of) their ramp to the dog run, did some loads of laundry, went through the weeks mail and found $1,800 which the business account really needed badly. I also found a large envelope from John and Karen Cress who pastor the Denver SDA Church. Enclosed with the encouraging words was a large check, give Karen said by someone who follows our saga and wanted to help. Well the amazing thing is that once again the timing is very special since tomorrow it is highly likely I will need to pay a large amount for the new drug, Nexavar since insurance may not cover it. I have deposited the money into the account for the meds in case we need them and tomorrow will be the day when we find out. Thank you friend for your incredible gift. And thank you John and Karen for forwarding it along.

Marilyn collected items Nan wanted like a robe, basic clothes, new pillow slip for her special pillow and other items and then drove back, did'nt miss a turn and made it here just fine to the hospital. I came much later after trying to get some work done. I"ll have to go back in the morning to work more. With Marilyn and Sharon here Nan has someone to be with her and I will try to get some work done that I'm falling behind in finishing.

Now its time to wrap up another day. Nan continues to do well and is making progress on the antibiotic and infection front. When the doctors are comfortable that the infection is managed then she will be released we believe. We just want the safe thing for Nan, no rush. It is such a good feeling to have these two ladies here to be with Nan and to encourage her and help her and listen to her. It seems that God sent them and we are both very grateful for their presence.

Please continue to pray for Nan, tomorrow is a big day with Bayer making a decision regarding the Nexavar, the insurance company making a decision and hopefully we are going to get them very very soon. Then we pray that Nan can experience some relief from these rapidly growing monsters.

Sending our love

Tim and Nan and Marilyn and Sharon

ps I can't get the photos to connect this evening so stand by for exciting photo of roses surrounded by beautiful people!

Saturday, October 20, 2007

Nan has wonderful well wishers

Dear Family and Friends,
What a day. Nan had a rough night last night with little sleep the first part of the night in spite of Pam's massaging and loving care. Nan fell asleep about 3 this morning and then slept soundly until after 8:30. There were a few quiet inputs of Dilautid along the way which helped with the pain and suffering. Pam found a place to sleep in the family room next door. I did'nt really climb out of bed until about 9 am. Pam and I went to breakfast, then back to spend some good time with Nan. AT 8:30 this morning my cell rang, it was Sharon to say she would arrive this evening in Oakland at 6:40. What was amazing was that Marilyn was arriving from Rhode Island at 6:30 at Oakland. We sort of had a lazy time resting and talking and doing more resting, then Pam and I went to lunch at a local Mexican place that ARt and I found. Then back to meet up with Bob and Carrol from Lodi, they had driven over to visit and we always love to have them as Carrol is so good with Nan's questions due to her years as a home health nurse. A little later Shawn and his mom Donna Want arrived bearing food gifts and beautiful roses for Nan. The food is wonderful and the Roses are just beautiful. Donna also left me a very thoughtful note. Pam and I had to leave as I needed to be dropped off at our house so I could get the van so the girls will have a vehicle to drive. Pam helped me convert it back to a van from a bed and then I hit the road for the airport. Sharon's plane was on time and Marilyn's was a few minutes late. It was very surprising to see Jason's friends Kevin and Kristin walk off the plane. They were on their way to see Jason and Jo this evening. They had flown on seat behind Sharon on the plane.
We loaded up and drove to the hospital. On the way Nan called three times at least to see where we were as she was holding of taking meds so she would be awake when we got here. What a time of reunion the girls had and Marilyn has already done Nan's belly dressing. Now Sharon is asleep in the recliner RV chair and Marily is sitting in two chairs which does not look comfortable at all. AFter I finish here I will be heading to the cot, tonight I feel guilty having such a nice place to sleep while the ladies do not. Could be a long night with such uncomfortable places to sleep. Nan is resting fairly quietly now.
As I was driving to the airport I got a call from George and Yvonne. They were visiting with Nan and found her awake. She enjoyed a visit and I'm so sorry I missed them. I know Nan was very touched by seeing everyone as she is a shy person and does not like to be the center of attraction ever. Thank you for your visits and kindnesses, for the very kind messages to the blog and for your prayers.
It has been quite a day and God has blessed us in special ways.
Our poor visitors are very tired as their time zones are 2 and 3 hours ahead of us here.
Today has been another day of antibiotics and no fevers. IV came and fixed a stubborn picc line and PT came but Nan had just taken Dilautid and was very sleepy. Tomorrow we hope to get her on her feet to see how that feels. We know we need to be very cautious due to the tumor mass.
So good night my friends and family, God has given us another day with many joys as we visited with friends and family!


tim and nan and sharon and marilyn!!!!! yea

Friday, October 19, 2007

The Circle of Life

Dear Family and Friends,
This has been an incredible day. At around 5 this morning Nan was awake and decided to open her heart. We discussed her understanding of what was taking place in her body, her awareness that something was different in her belly, her willingness to keep up the good fight but also realize that the fight might end soon. She was the picture of grace and class as she talked about her love of life, the powerful bond she feels with the children and grandchildren and her deep love for me. It was a moving and powerful time and another example of why she is such a special and unique person. I will treasure our sharing hearts forever.

At 8:30 Dr. Ganey was in our room. Nan woke up and I jumped up out of bed in the little cot. He let us know that the infection is gradually being controlled and that the lack of high fevers was an extremely positive sign. He also set up a game plan to get Nexavar, the next drug we are trying to obtain for managing the tumors. He said he would write a prescription and I could go to WalMart and get it. So as the morning progressed I waited for the prescription. His office called to say it was not all that simple. The drug could only be ordered using a program called Reach directly from Bayer. Someone in his office was working hard on the process, had been in touch with Bayer already and they knew the urgency. Soon they faxed over a form to sign and just then Nan woke from a long nap and was able to sign. The nursing staff faxed it back to the office and they forwarded it to Bayer. Around 5 this afternoon Alice from the office called to say Bayer had gotten the papers and by Monday would have things worked out. So at this point we do not know if insurance will pay or if I will be called on for the funds. The infectious disease doctor talked with us about their concerns, the infection in the blood is a minor form of Staph, not a dangerous strain and the antibiotics appear to be helping. He said that we might be able to go home with antibiotics that we could administer like we have in the past. He also raised the issue that if Nan has a fungus, a yeast type infection inside it could be much more difficult to treat. He said they are still eyeing the picc line as a possible source of her infection and the picc line might have to be replaced.
Nan was able to manage her day well with 8 mg doses of Dilautid and Adavan for extreme pain. She was awake many times and totally aware of everything. When she spoke to Dana she asked her to come and Dana who had just had hand surgery agreed to come as soon as she can, probably Tuesday. Sharon also talked with Nan and is coming on Thursday to visit with Nan. And Marilyn is arriving tomorrow afternoon in Oakland at about 6:30 pm providing all the connections work out. Pam is nearing Concord right now prepared to spend the night here in the room and I have the RV recliner out ready for her.
Midday both Nikki and Jason let us know that they were planning on coming to visit this evening. She was so happy that they could come knowing how busy their lives are. Nikki and Keanna arrived first and Keanna did pictures for Grammy and was her normally delightful self. Nikki and mom got to talk and enjoy time together, then Jason and Jo arrived later having fought their way through traffic to get here. Nikki and Keanna had to leave to get Keanna to bed and Jason and Jo stayed for awhile longer. We enjoyed being together as family and had many precious moments. Even though Nan had Dilautid from time to time to manage pain she remained awake for the evening. It was just the thing that she had hoped for this morning, to see her precious kids. Thank you for coming to spend important time with mom. Its the best gift one can give, time!
Jason and Jo brought a couple precious photos of Timothy for us and I'm looking at them now. What a dude!
So we have a day with honest sharing of feelings, expressions of fears and hopes and early this evening our pastor and his wife Jeannie came to visit. Nan was so glad to see them and they came in spite of being on vacation. What precious people!
Now Pam has arrived and the party is heating up. She has Nan laughing as they together are trying to fill a cup of water from an Arrowhead bottle and got it too full and it spilled down Nan's neck. Pam is giving Nan a rundown of what she has been doing today.
I'm going to try to include some photos we took tonight with my ancient camera, my kids crack up about my camera, they have much nicer ones that actually take serious photos. But you know my old camera has taken over 50,000 photos so far so to me its a keeper.
We now know the upcoming week will be filled with family we love. Our prayer is that the new meds might be obtained, that they might be the magic bullet we need and that Nan can get some tumor / pain relief. We are prepared to live with whatever God guides us to do.
Thank you dear friends for your loving interest in the blog and a special hello to Lloyd and Bernice, its wonderful that Bernice is feeling better and making a good recovery. We are also very relieved that Roger is back home in N. Carolina with his Carol.
We are anticipating the rest God has prepared for us during the Sabbath hours. We hope that includes rest from pain for Nan.
We have experienced family, heart sharing, hopes, fears and blessings. We are thankful that Nan is much much better tonight than a week ago when we had just arrived soaking wet and with a fever of over 103.
love from our little room, 3117

tim and nan and pam
PS please forgive the lovely photo of a house. Once again I put it in and do not know how to take it out. I'm still trying to get the photos I shot tonight into the report.

Thursday, October 18, 2007

Can we talk?

Dear Family and Friends,
That's the first words I heard this morning when I woke, Nan was asking if we could talk? Which meant she had woken up from the stupor of the last few days. We talked and when Jason called he ended up talking to his mom and when Nikki called she ended up also talking to her mom. Nan talked to the doctors who were very pleased that she had woken up, she talked to the nurses and this evening she talked to Sharon. Just now Mary called but the Dilautid had taken over and Nan was to deeply asleep to wake to talk. What a friend Mary has been to Nan!
The doctors are working on getting the Nexavar and when we have it lined up for sure then we will stop the AMN for a couple days of washout and begin. How we hope and pray that Nexavar will do its magic for her. It is only a chance but I think we all feel we need to take it.
I stayed here working on appraisal business until Dr. Melynk appeared in the doorway. We had a pleasant visit with him and of course the real first business is to get the high fevers stopped and the infection in the blood stopped. He said the latest cultures had not grown out anything and they feel they have found a antibiotic that will kill the bugs in the kidneys and nephrostomies. The nursing staff have worked very hard at keeping Nan comfortable and clean. The helper this morning was pretty amazing, gave her a real bath with soup and water, then used the wonderful lotion that Pam had brought for her back and arms. I use the foot lotion that Marilyn B supplies us. I brought a power tooth brush from home and Nan did her own teeth this morning, able to hold the little device by herself again. Nan was awake for about 3 hours and then got hit with nausea and gut pain that was pretty intense. The nurses quickly gave her Zophram for nausea, Dilautid for pain and Adavan to help her fall asleep. After a few minutes she did fall into a deep sleep. Then I left to see a property in Fremont, have a quick dinner in Olive Garden and then back here to the hospital where Nan was asleep. She had woken at 4 with some pretty intense pain but meds had let her fall back asleep. She continued to sleep for another hour after I got back and then woke and we shared some of the new Fiji water from Longs, she loves Fiji and since its the only thing she can put into her system why not get the good tasting stuff. She got hooked on it in Boston where I kept some for her at all times. We talked about things and she got to talk to Sharon but we missed Dana as she had long gone to bed. Sharon hopes to be able to come our way by next Thursday and Nan really looks forward to seeing her. Nan is counting the days right now for Marilyn's arrival. Every day she asks, is it today?
Art called this morning but I didn't get to get back to him until I was on the road. I have AT&T, the one that is supposed to have the least dropped calls, right. I had to redial ARt at least 5 times as I kept dropping his call as I drove through downtown Oakland and toward Fremont. He is alone for a few days while Connie catches up with her friends in Indio. Talking to Art is therapy for me as we discuss important things and have a history together. I respect him a lot and have found him very kind and supportive. For example when Jo needed to relocate to California after she finished her teaching position in Dallas Art volunteered to help me drive the motorhome back to Dallas to move her possessions and car to MBA. We made a quick trip and his help was just wonderful. He found fire wood last winter and went to the place where it was stored, brought it to Discovery Bay in his truck and stacked it beside my house all in the same day. When we needed ramps he came and built them, he and Connie just keep helping and we sure do appreciate it.
Today we have seen a real turnaround in Nan. She is awake again, still in terrible pain but past the awful effects of the blood infection. It just touched my heart to hear your speaking clearly and making perfect sense this morning. I'm sure you can live the scene with me after days of almost no communication, suddenly smiles and wit, more steady hands and feet, TV is back on to ER and tonight Survivor China. Not that she ever makes it to the end but she likes the sound of TV sound in the background, its her pink noise and its fine with me.
So tonight a big prayer of gratitude for her waking up, a powerful request for the new drug and an even more powerful request that it can offer some help with the lethal tumors.
We are glad to read the messages written in to the blog and the ones written to us directly to our email. WE know it takes time to pray for Nan and we thank you for taking the time. I was touched by the email from Carol, that Roger is on his way home and had a good faithful conversation with his brothers. Life is precious and we do what we can to preserve it and then we treasure the salvation Jesus has purchased for us on the cross, eternal life, without pain, suffering, selfishness, hurt feelings. Oh that we had the mind of God, then everything would make perfect sense.
For those of you who are concerned about how I am holding up. By staying here in this high end cot I am getting very good sleep with only a few times of being awake. I go down to the cafe for breakfast and have been having scrambled eggs, cottage cheese, pineapple, oatmeal and low fat milk. Its not cheap but it carrys me for hours and helps me feel pretty good. I have triscuits in the car and some good food bars from CostCo and there is always a Taco Bell nearby for a bean burrito. What I'm not doing is exercising at all and not drinking enough water, need to work on that. I'm with Nan most of the time and doing what work I can without being away too long. I help the nurses remember things that Nan needs. I'm doing what I believe it right at this point in time. Sometimes I cry, usually in the car where its just me but mostly I'm OK. These are tense times with every hour bringing either good news, no news or bad news. Its hard to keep ones mind above the immediate to hold onto faith in the eternal. I know God is near us because He says He will be. WE want to invite Him to be even more with us.
So good night from room 3117
tim and nan

Wednesday, October 17, 2007

Nan is resting quietly this evening

Dear Family and Friends,
Nan is quietly sleeping now as a second unit of blood flows slowly into her body. She has just had both Dilautid and Adavan to help her get needed rest. She is sleeping deeply and her breathing is rather rapid. A couple hours ago whe spiked a fever of over 102 but after some Motrim and time passing it is nearly normal again. We have Heather tonight as her nurse. Heather has been with us often over the past year and often asks to be Nan's nurse. She goes well beyond basic nursing care and this morning started the ball rolling for Nan to get a little more Dilautid for better pain control. Now Nan can have 6 to 8 mg of Dilautid every 2 to 4 hours as needed giving the nursing staff more latitude in helping her with the pain.
Today Dr. Ganey arrived at 11:30 as he said he would so we could consult. I had stayed put in the room so I could get to talk with him. He assessed Nan's condition with an obvious first line of attack on the infections she is battling, then we will be trying the new drug Nexavar after a couple day washout period between AMN and the new drug. He calls the tumors that have grown lethal and says they are the biggest obstacle to her getting better. I asked for a wound care nurse to assess the fistula and change the bandage and while I was out this afternoon that did happen. We have yet to see the kidney team which is very unusual since they are usually through our room every day. Today's creatins were down to 2.8 from yesterdays 3.3 which was a very positive direction. The internist added a slight amount of fluids since she thinks Nan may be getting a bit too dry. A determination was also made to have a new transfusion and that is taking place now. A steady stream of antibiotics is continually flowing into Nan and one only hopes they will do their job on her bugs. Interesting that the MRSA staph has been in the news so much today and Nan has tested for MRSA ever since Boston, the primary positive benefit is you get a private room, saved us about $5,000 in Boston since if you want a private room there you have to pay in cash for is on the spot but with MRSA you are assigned a private room automatically. This time they found MRSA in Nan's urine and nephrostomies. I am not clear on the exact infection Nan has in her blood but I'm told its a type of staph. At this point it still has Nan very confused and limited in her ability to solve problems.
When I had to leave for home and some work this afternoon she looked up, opened her baby blues and said, please don't go, wow that made me rethink my trip but I still had to go. 3 days in a shirt was enough already. Soxs were no longer white. So home to take a shower, play with the lonely doggies, do some computer work, forward even more work to the hospital laptop and then head back to the hospital.
I found Nan shivering under a sheet and I added a blanket knowing that her temperature was headed upward, sure enough, 2 hours later it was 102+. Then the Motrin and then it started downward again.
Mary came this evening as promised and after spending some time with Nan we headed over to Spaghetti Factory for some very good pasta. She and I got to just remember so many wonderful times with Nan and it was good to reflect on the positive influences Nan has made on both of us. Then I came back to the hospital and now I'm getting ready for bed when I finish this epistle.
Nan is holding her own vitals wise, is continuing to have extreme pain, still has infection in her body and we can hope for better things tomorrow. We received great news this afternoon that Marilyn has managed to come either Sat. evening or Sunday. Sharon is still planning on coming as soon as she can but her life could not be more complicated than it is right now. Pam will spend some quality weekend time with us and we look forward to seeing Shawn and Donna Want on Friday. I received a very nice email from someone in Africa today regarding his care for his wife who had GIST. A very thoughtful message.

This evening is one in which once again I reflect on the day and our situation. It is very fragile right now. I still believe that God can get Nan through this but I am also aware how serious her condition is at the present time. I am asking God to do what He knows is best for Nan. I know what I want, one more miracle and a return to a quality life for Nan.

Please pray for Nan, for Rogers brother and for other GISTers who are facing tough decisions and health challenges.


tim and nan

Tuesday, October 16, 2007

Slight improvement for Tuesday

Dear Family and Friends,

Nan just asked if she was going to be a guinea pig forever? In a way she is a forerunner for other GISTers who will follow. For example today Dr. Ganey agreed that we could switch over to Nexavar the drug that holds some slim promise of shrinking tumors and controlling them. He was here assessing her situation. New blood cultures were drawn today and since the picc line would not allow a blood draw she has had to be stuck three times today in her left hand, she did not enjoy that at all. Our friend Art came to visit this morning, held Nan's hand for awhile and then we inspected his new coach and he took me to lunch. Art is a level headed person who has experienced his share of heartbreak in his life and is a true friend to us. Finally he had to leave and I missed him instantly. Its been a cold rainy day but Nan has shown a bit of progress. This morning her fever went up to about 103 but then started falling and is now normal. As the temp fell she was more able to communicate and we had some pretty good talk time. She longs to go home but I've explained that first we deal with the infection which is proving very stubborn and resistant. They pretty well have found a way to deal with her pain and it involves Dilautid every 2 hours or so and Adavan every 4 hours. This gives her rest and comfort while still allowing for a brief time of being awake. She is handling her water bottle well today and has far less shaking than before.

I have no idea if insurance will spring for the new meds or not, I doubt it so it may be up to us to find the funds for the medicine. It will be clear within the first few weeks if it is helping or not and if it is then we would push Bayer to consider supplying it to Nan on a compassionate basis. Lots of bridges to cross if we get the chance. Right this minute her mind is focussed on just one thing, a new hit of Dilautid as enough time has passed that she is missing it and feeling pain again.

I had the chance to talk to both Nikki and Jason today as they drove home from work. It is always great to hear their voices and be reminded the family is a team of caring people who love this lady with all their hearts.

I've been able to accomplish some work from my little laptop office here in the room which is connected to the outside world by a Sprint data card. What a little miracle that is, otherwise you have to find a landline that will work and hospital switchboards do not like to transfer data for very long.

This afternoon Mary and her little 2 year old grandson appeared at the door. What a cute little guy Owen is. They only stayed briefly since Nan had just taken her meds and was quite sleepy but it was so good to see them. I've included a photo of them with Nan. She would probably tell you that the photo does not show her at her best.

We will have a quiet evening for when she gets the Dilautid infusion she will sleep for the next couple hours probably. And I will slip out and buy a tiny desk lamp so I can work without having the lights on. Lights and hall noises are really bothersome to her just now as her sleep is shallow usually and easily disturbed.

You have heard us mention Roger and Carol who live in N. carolina. This evening Roger is traveling along with a brother to see a brother in Seattle who is very ill. Lets keep Roger and his family in our prayers as the illness is very serious. This means Carol gets to hold down the fort with all the cabins all by herself so she needs our prayers also.

This evening we ask that you pray for Nan's infection, for some solution to the tumors so there would be less pain, for her courage to not run dry and for calmer times soon.

Love to all from room 3117.

tim and nan

Monday, October 15, 2007

Nan recovering slowly, 2006 taxes paid, friends call!

Dear Family and Friends,
8:38 pm in room 3117, Nan is resting quietly with brief waking moments as the nurse hangs her tpn for the night. Sure more complicated than what we do at home. When I returned about 8 Nan was mostly awake and not liking it much, was feeling pain and her last Dilautid fix was at 4. The nurse said she had turned down a dilautid in between. Right after she got her 4 mg of Dilautid it was time to take the AMN pills, hard when you are awake, impossible when you are asleep. The clever nurse made a slurry of the powder from the pills and a bit of water and Nan took that down easily followed up by several drinks of water from a bottle she held herself, all signs of progress.
Now I have the lights turned out so she can get some rest. Later I will change her tummy bandage which has needed it all day long, I think we may move to doing it twice a day. Right now there is a lot more coming out the little fistula than before, probably caused by the large tumor which is next to it. How I hate these tumors. Take them away and Nan can recover, deal with them and they just keep growing larger taking up more and more valuable space in her little body.
I slept here last night, went to bed about 9:30 in my little luxury cot under two hospital blankets and my trusty breathing machine. I only woke when Nan needed some water as she slept well the entire night only waking when she needed further pain meds. I did not roll out this morning until 7:30, felt good to sleep in and have Nan so close by. I think she felt more secure this way too, so I'm back to sleep here again tonight. Somehow Discovery Bay seems a very long ways away when she is this ill.
This morning I kept an Oakland appointment for a FHA appraisal and then drove back here to the hospital, stayed a while and then drove to DB to pick up the checkbook and back to Brentwood to Ken's office where he had 2006 tax year prepared. It was less than I expected and I gladly wrote a check I would never have guessed I could write due to Nan's diligence in getting her papers filed with the Social Security system and getting the disability check. I still have left toward purchasing the new medicine when Nan beats the staph infection in her blood.
It was a huge answer to prayer that the money would be available to cover last years taxes. The worry about those taxes has hung over me for many months and it is another thing that I can safely say God provided. How I appreciate Kens' hard work preparing these taxes, since we run a business our taxes tend to be much more complicated with extra forms to file and issues to deal with. An amazing fact emerged as we prepared for the tax filing, our medical expenses, airline tickets, hotels, medical bills and meals came to about the same amount as was kindly donated to Nan's recovery fund during 2006. No wonder all our credit cards are maxed out, it cost a lot to live in Boston, to travel to City of Hope, to deal with this terrible disease. Once again God has provided just what was needed.
Today I got to talk to a number of clients but even more enjoyable was talking to our friends and family. I got to converse with Art a couple times today as he made the trip back from Indio to Tracy and now Discovery Bay this evening. He is tired but safe. He had to divert his planned route due to Highway 5 being closed near the tunnel down south. I also got to talk to Sylvia who has just returned from Christian Womens Retreat where she helps with the leadership. This is the wonderful retreat that our friend Pam started many years ago. Sylvia was just checking in on Nan's progress and it was good to get to talk to her. I also got to talk to my brother Jerry as he is in town for a fortnight waiting for the next train north that will need a engineer. Nikki called as she was driving home from work and its always fun to get to catch up with her busy life. I also got to speak briefly to Steve today who was working very hard on a construction job locally. This evening I caught up with Pam and we reviewed Nan's current condition. Pam really helped a lot by staying with Nan on Sat night. How we hated to see her drive away.
Now Nan is waiting for a promised extra hit of Dilautid to calm her painful knee and stomach. I just changed the bandage and the tumor seems larger every day.
So once again I draw this method of communicating to a close. I have discovered that its hard to be alone for hours at a time when facing such challenging health issues for Nan, a call or a visit really lightens the load for a time. Nan took a couple calls today, one from Mary and one from Irene. Although she could not do a lot of talking she could listen and respond a bit and I know she was touched by the calls. We have found that her phone is not holding a charge very well right now so if you have called and not gotten through it could be a technical problem with the phone or Nan cannot respond quick enough, so let it ring a few more rings before giving up. She has to think through what she is hearing and then respond, wrestle with the phone to get it open, all very hard jobs for her right now.
Please pray for staph removal, fevers to diminish, clarity of thought to return and pain reduction. Oh and yes tumor reduction would be nice too.

Thank you my friend for caring enough to read these words and to pray for Nan.


tim and nan

Sunday, October 14, 2007

Staph Infection in the blood!

Dear Family and Friends,
Late this afternoon the lab here at the hospital and the lap, Quest, where the tests were done finally communicated and we learned Nan has staph infection in her blood stream. This evening after she had a chest xray and was taken down for a ultrasound of her kidneys the long line of antibiotics was started, 5 different ones are planned for this evening alone. This morning we met with the doctor, a young very pregnant oncologist who really knows her stuff. We asked that the shots could be stopped and she shifted to iv push 8 mg of Dilautid every 2 hours or as needed. Nan has not needed them every two hours instead stretching the time up to about 5 hours before needing more. She is primarily in another world due to the high fever and blood infection. She still knows her same but keeps asking if we can go home, get her up and out of here. Pam was with her all night last night and there was very little rest, every 45 minutes Nan was in pain. With this new routine I think we will do much better. I'm staying here tonight. My rule is when Nan is too ill to know to call for help with the call button then someone needs to be with her. Last night Pam, tonight is mine, just love that cot with its plastic mattress. This afternoon the infectious disease doctor spent time assessing Nan and noted the jerky limbs, the low blood pressure, the fevers and asked the hospital doctor to back the nurses up on the floor with spot checks to see if she was doing OK. I got to speak to that doctor, a young lady with a huge heart and her plan is to step in and move Nan to intensive care if her blood pressure drops too low. They have medicine there that can boost the blood pressure if needed. Its a good plan and is reassuring to me.
We are dealing with the fever, infection first and then we will consider introducing the new medicine to try to shrink the tumors. The oncology doctor was totally up on the drug Nexavar and says it has possibilities for Nan.
Even as I write now at 9 pm I am falling asleep. After blogging and a piece of toast last night it was nearly 2 am before I fell asleep and at 7 this morning my Nan alarm went off, wondered how she was doing, etc but waited until 9 to check in with Pam who was asleep at that point. She filled me in on the night and I worked for awhile in the office, then loaded up and drove over getting here about noon. Pam had not eaten since yesterday so we went to the cafe and found enough to satisfy us both. Then back to sit and care for Nan. Finally Pam had to leave for her work and school.
The care level has been very good today and we appreciate the level of nursing they have on this floor.
So our prayer tonight is, Lord please drive out the blood infection and restore Nan to health. Even partial health will do.

tim and nan

This coming weekend is my 40th class reunion for Laurelwood Academy. It is held at a wonderful hotel on the beach up in Oregon. Nan and I went once and enjoyed it very much. Today Bev wrote saying her sons had moved my album, Tim Mustard Sings, to a digital format and wondered if they could be made available at the reunion. I was so touched by her kindness. Of course anyone wanting to hear something I recorded that many years ago must really love memories. You see when I was in high school at Laurelwood during our senior year I recorded an album and included our quartet, our choir and recorded it all in the gym. Hardly professional but it sold well right up to when I ran out, that is 500 records later. It was a great experience and captured many of the young people creating music.

Saturday, October 13, 2007

Sabbath evening, Nan is finally sleeping deeply

Dear Family and Friends,
Its been a long day for Nan and most of it has been spent in suffering with uncontrolled pain. Turns out we have been taking much more pain meds at home than they will allow in the hospital. We've been giving Nan between 6 and 8 mg of Dilautid every two to four hours. Here they wanted to give her 2 mg every 4 hours and of course it did not touch the pain. The doctor who was on call this morning decided that nan should get 2 mg every two hours but in a shot, not in the IV, well that adds up to about 12 shots a day and nan is not happy about it, that will change tomorrow for sure. Their thinking is that shots given sub cu have a longer lasting effect than IV. What saved this evening was a hit of Adavan and they are willing to give much more Adavan here than I give at home. I give .25 of a ml and they give a full ml here, at least 4 times as much, no wonder she is now sleeping soundly for the first time today. Thats a lot of relaxing, sleeping medicine for her. I am waiting for Pam to arrive and then I am going to go home to rest but I've been calling and no answer. I hope she is OK and not crashed somewhere along the dangerous roads she has to use to get here. Highway 12 and then 4. Not good roads at all.
I left at 7:30 and went to Red Robin for a vegeburger, it was totally good and along with their side salad and some lemonade it was a great meal. Now I'm sitting in the dark in our recliner writing and listening to her sleep. They have hooked up oxygen since her reading was a little low, I think its because she is sleeping so deeply now. She is about to start her second unit of blood and the nursing staff have been adequate today, not as good as yesterday but OK. I have to tell everyone who starts a new shift that her heart rate is normal at 110 and her blood pressure tends to run very low, otherwise they get all nervous and start doing crazy things Nan does not need.
Nikki and Keanna surprised us both with a visit this afternoon. Nan was awake while they were here and even though in pain was very glad to see them and talked with them. Then all too soon they had to go and it was back to just nan and me in the room. If and when Pam arrives she is planning to stay the night and we have a cot here for her when she needs it. She likes to come in late and spend the night with her buddy Nan and of course we are delighted to have her.
We've learned nothing new today but the burst of antibiotics last night and today seems to have driven away the bugs as nan's temp has been normal or below normal all day today.
I slept in to 7:30 and then showered. I called and got Nan on the phone and was so happy to hear her lucid voice. I mistakenly told her I was coming soon but by the time I collected all the things she needs here in the room and loaded up I was much later than she expected and she let me know about it in her typical low key fashion. Then she sent me out on a search for a fan as the room was stiffling hot and she was miserable. Then she wanted non smelly deep heating cream and then she wanted some wash clothes. I don't question, I just go do as I'm told. So I started at CostCo, no fans, only heaters, then cross town to Target, no fans, only heaters, then Longs, no fans only heaters, then I was heading for Ace hardware when Nikki called to tell me the AC was fixed and mom's room was not comfortable so I aborted the trip to Ace and came back with non smelly cream that did not heat up her knee, she no longer needed the 12 wash clothes I got so I did a lot of running for nothing. Oh well I gave the GPS a good workout.
Nan enjoyed talking to Sharon today and we sure hope things work out so Sharon can come visit as soon as things settle down for her. Nan is now weaker than she has been since she recovered in Boston, the tumors are doing their negative thing and her limbs twitch a lot at times although I notice that when she is this asleep there is no twitching at all. I'm so glad she can rest now and I have a blanket pulled up keeping her warm enough in this now cold room.
I have no clue as to what tomorrow will offer in our ongoing saga but I enjoyed talking at length with Karen Cress this morning, then Art and Pam. Talking to friends and family helps ease the anxiety I feel. Sharon was very helpful too but I think she was someone preoccupied with pursuing three little neighbor dogs that keep digging under her fence and getting into her yard. If the little dogs value their life they probably should stop invading Sharons yard, she does have a firm side and they should beware.
Pam just called and had some plumbing issues at her house but is now on the way, sounds awake and chipper so that is good, safe.
For me I think I feel a nap coming on, Nan is sleeping so peacefully finally and I am so glad. When she is asleep this deep she is not feeling pain, yea!
I love hearing how things are in Lodi, N Carolina and other points in the country as people write to the blog, yes even Tracy and Wes are most welcome friends.
Now I'm winding up. It was good to hear from Jason, this has been an incredible weekend for him, seems he is in charge of a lot of events, vespers, Sabbath School, being referee foot ball games in the rain and then campus supervision. We are proud of our kids, all 6 of them!

Seeking your prayers for Nan at this point in her life, where is God leading? What does He have in store?
Sending our love to each and everyone of you reading these words. Please know we care and we appreciate your caring.


tim and nan

Sabbath Morning report, Nan is much better!

Dear Ones,
A quick report as I am anxious to get back over to Nan. I called the nursing station this morning to inquire about Nan and found myself talking to her directly. She sounded much much better and was totally lucid and was grumbling about the rough night and not enough sleep etc. Sure sounded like the Nan I love. She said she does not remember me leaving last night and yesterday is sort of blur. She asked the nurse in the background what her latest temp was, it was 97.8 which means normal, they take it under her arm and you need to add a point to the resulting number.
So I'm collecting those things we have at the hospital to make her stay work better and heading over now. Thank you all for your many prayers and suplications for Nan.

She is in room 3117 on the A ward at John Muir hospital, Concord Campus just off Grant off 242.

I am taking her cell phone so she can be in touch with the world again if she wants to be.

Thanks and we send our love,

Tim and Nan

104.1! / Rainy trip to Dr./ Hospitalized / Comfortable

Dear Family, Dear Friends, Dear GISTers,
Oh the heart break of this terrible disease. On a morning when Nan would have loved to be home just listening to the rain fall fate had other things in mind. I woke at 7:30 to hear Nan throwing up only she was not completing the process. I jumped out of bed and around to her side, spoke sharply to her to get her attention and held the basin and told her to finish throwing up, I could tell by her eyes she had no awareness of what was happening. I finally got her mouth clear and cleaned up, then quickly took her temp, it was 104.1. Almost paralyzed by fear and dread I began to do what I know by instinct. Reach of the baby ibuprofen, give a small dose, I had to tell Nan each step to take, open mouth, swallow now as she looked blankly at me, then prepare ice packs for under each arm, where had helpers put the ice packs? I found one and created a second with plastic sacks, then into a pillow case and under the arm, then off with the covers, on with the fan, soak small towels and place one on the forehead, one over the legs, give hydration stat, fast drip to increase fluid levels, then take temp every few minutes, now its 103.7, now 102.8, now 101.7, now 101, Nan you can have a sheet over your freezing limbs, now its 100, you can have your blanket back, now its normal 2.5 hours later. My heart is beating fast just reliving those anxious moments. At 9 am Terry came to take blood cultures and urine samples. She helped with everything and gave me a break emotionally. Then when Nan was strong enough I helped her out of bed and we moved together like slow dancing step by step to the stair chair where she sat and rode down. Then I ventured into the office to care for some overdue promised work, then back to dress Nan and begin to prepare the car with TPN, stomach pump, blankets, air bed, mattress, pillows. Then it was time to load Nan into the van and I found I could not get her into the bed by myself. LeAnn came to the rescue as she has so many times before and together we pulled her into place and placed the heating blanket Nikki gave us and plugs into 12 volt over her to ward off the chill and damp. We drove through driving rain to the Dr. office in Concord and arrived late and in driving rain. In the process of unloading Nan we both were soaked to the skin including her fuzzy socks. In the doctors office the girls found blankets and wrapped her to get her warm again. Dr. Melynk came in and quickly assessed the situation determining that she needed to be admitted to the hospital. He took all the literature I had assembled about Nexavar but said we needed to deal with the now issues first. Then back to the car in driving rain once again getting even more wet. Two blocks over we pulled in to the hospital and found the roof over the entry was leaking so wet yet again. Dr. had arranged everything and we went directly to a floor where we have been many times and we have only had great care. Right into a private room by the nursing station, room 17. The nurses went into action, bringing armloads of warmed blankets to surround Nan and within a few minute she was warm, into her gown and resting more comfortably. Vitals revealed a temp of 103.3 and within a few minutes antibiotics arrived stat and were started. Heart rate of 150, strange blood pressure and Nan was very much out of it, almost in a coma. She asked for and received ice water and sipped a couple cups, suction was started to drain fluids off and a new TPN was ordered from pharmacy. The nurse worked as a team and very quickly gave Nan the support and help she needed. It was totally clear to me from the moment Dr. said, admit that we were in the right place at the right time. I had alerted Nikki and Jason to our situation and Nikki and Keanna called to say they were on their way. They brought dinner to me and Keanna played hide and seek with curtains and gave Nan some smiles. Nikki was her normal wonderful helpful self providing me with emotional support and love. Gradually as they were with us in the room my heart calmed down, however the backside of my jeans and shirt remained soaked. Only by the time I left to come home this evening had I finally dried off totally.
Yes there were moments today of special difficulty, helping Nan get in and out of the car was as tough as it gets, trying not to hurt her and move her at the same time, trying to keep the rain off with a tiny umbrella and yet needing both hands to keep her from falling, also talking to the doctor about whether we were willing to not restart her heart should it stop, not installing a breathing tube if needed, tough decisions but I know Nan does not want to kept alive as a vegetable, she has been clear about that, also a nursing decision that she could only have ice chips when Nan had asked for ice water with chips, I let them know that this was the only thing she can have and she would have the ice water with chips as requested. She did.
Just before I left Nans side this evening at 10:45 or so the results of the antibiotics were showing signs of working, she became much more aware of her surroundings and me as well. Unfortunately that meant she also began to notice the pains that she had been unaware of as well. They use a mixture of Dilautid and Adavan together which seems to be very helpful for the short term. They also bumped the pain patches up to 150 from the 100 we went in with. So she was fully aware when I left and agreed for me to go.
I wish the doctors office would have ordered the urine and blood work when I asked them to earlier in the week but at least on Thursday they took me serious and did order the tests so Terry came this morning and by the time we were in the hospital some of the results were already back so we saved a day on that front.
As you might imagine I am pretty tired as I write now. Its 12:30 and I will have the luxury of a full nights sleep but at the cost of not being with my pretty baby. But I firmly believe she is in good hands and I have my cell number plastered to the wall if they need me.
We got an unwelcome call from our Provident Home Health, they called to tell us we had someone new for next week, we said we did not want anyone new but they said Bean was being requested by someone who had enjoyed her in the past and so they assigned us someone new. We are not amused but meeting our "new " person will be postponed as Nan is in the hospital and we will not be needing anyone to help at home until she returns.
All in all this has been a very big day with trauma, risk and resolution.
Please ask God to watch over Nan. She needs God's peace and comfort. She needs to know she is OK in God's arms.
Thank you each for your kind blog comments today. They were a great comfort to me as I read them this evening upon coming home. You do make a difference for our family and for Nan.


tim and nan

Thursday, October 11, 2007

Blog 601, Nan is sleeping and the house is quiet.

Dear Family and Friends,
I'm home from a day in the field seeing homes and nice people. Bean, our caregiver, has mopped the floors, cleaned the counters, washed everything in sight in the clothes washer and even enjoyed a griller for lunch. She is a real find and does an excellent job on all fronts. Tomorrow I am the caregiver and we travel in the afternoon to see the doctor again. I have written to Boston asking many questions and I hope they have a chance to answer before we leave for the doctors office. With the Dilautid being increased to 4 ml nan has really been asleep today. We had a terrible night with pain keeping her awake for hours, the colostomy bag broke and that was a special time at 5:30 this morning. We were up many many times during the night trying to solve the pain issues. Nan's bravery only goes so far and then she cannot contain herself any longer. My heart is continually torn by her suffering and pain.
So when she gave up on the bed at 7:30 this morning and wanted to come down I helped her walk the few steps to the stair chair, then into the chair, then into the wheel chair, then down the ramp, then steps into her recliner, then a warm blanket around her. I gave her 4 ml of pain relief at 7:30 and she only began to wake at 11:30 when I had to leave for the field. That was her longest period of rest in some time. We both woke this morning to realize that we had forgotten to change her pain patch on the third day so that was the first thing we did when we came down, get a new patch on her shoulder. Bean told me she didn't take her pills until about 4 this afternoon, just too sleepy.
I came home at 6:10 and she was asleep then, woke briefly to see me and then has slept to now, 7:30. Her limbs are very busy and shake and move a lot now. I'm thinking it might be the new med we tried and in fact I think we should stop taking it for several days to see if the coordination gets better and the shaking subsides. Nan called me about 5 this afternoon to see if she could take more pain meds. Her last ones had been at 12:30 so of course I told her to go ahead.
This evening I am totally exhausted and I'm very glad to be out of the drivers seat of my little bug. This morning got very busy doing business things, seemed a lot of people needed a tiny piece of me, or an appraisal report or something so I left late. The first house was a little 3 bedroom 1 bath that was so well cared for. It reminded me of the house we lived in in Tracy for several years. Started its life as a flat top but someone has added a peaked roof making it more appealing. Then on to Hayward to see a house that someone has added a second story to at some point in the past, larger than others in its neighborhood it was tough to find comps for. Then I debated and went to Olive Garden for a 20 minutes soup and salad. You just cannot believe how good everything tasted as I've been eating my own 5 minute cooking for many days. Thank goodness Mary brought soup I can warm up and Sylvia left home made bread. Of course taking time to eat cost me time for the next appraisal in Lafayette. I am determining a value as of March 1996 for an estate. Average home with a panoramic view of Mt Diablo, worth probably $300K, it just sold again for over $700K a few weeks ago. Then after shooting a photo of the house I punched in home in the GPS and started. Traffic everywhere I chose the back roads and made it home nearly on time so Bean could leave.
I ripped open the mail but found no money, lots of bills including a pg&e asking for a payment of over $400 in the next 48 hours, yikes, better deal with that one.
Now I start the process of getting ready for bed, preparing meds, TPN and the gradual transfer of the support systems from family room to bedroom, pillows, sheep skin, TPN, pump, ice water etc. Takes over an hour to make it all happen but I've got it down pretty well now.
Now a quick trip to the motorhome for the air bed for the van, files to Steve and Nikki's house and then go to bed.
I sure enjoy reading the blog messages and hope what George and Yvonne said is true. Ken has the data now, came and burned a CD this morning with everything I have entered, now he will clean it up, make it add up and do the taxes.
I think we are sort of auto pilot right now. Most things are about the same as the day before and we try to find minutes to hug or talk to just watch Law and Order together. When I am in the kitchen she asks what I am making, just for interest sake.
Oh that God would show His hand or is He? I'm not sure what to do or what not to do anymore.

We both treasure your prayers in Nan's behalf. If anyone needed God's healing hand it is Nan now.


tim and nan

Wednesday, October 10, 2007

Calm day, very nice new helper, Nan is holding on with courage and humor!

Dear Family and Friends,
This evening as I write I have a small sense of satisfaction, I have just completed entering all the business checks for the the year 2006 into Quickbooks Pro and can now turn over the up to date data to Ken our brilliant tax guy. I feel that God has helped me slow down, sit in the chair and just keep with it until it is done. It is a very humbling experience as I retrace the many times your help with the recover fund made the difference in making the house payment, paying 941 taxes, buying important meds and even food and gas. You have shared thousands with us and nan and I were just talking about where we would be without your kind help. We can only pledge that we will help others in a more involved way than we might have in the past. I am also amazed by the many hundreds of entrys for medical related items, all the way from tickets to medical centers, hotel rooms, meals, rental cars and thousands in medicines, scans and doctor fees. Blue Cross has been wonderful about paying their share which is usually accepted as payment in full for the huge hospital bills which run up at a rate of about $10,000 a day plus tests, scans, surgeries, etc. This is certainly a different way to spend this time of our lives than we would have expected as our lives had actually been sort of boring, just work hard, do some traveling, enjoy family and make few waves, but then our snug little ship was hit by an iceberg, cancer and things will never be the same again. We certainly are not the only ones to be hit hard, nearly everyone I meet has a story to tell of a parent, child, spouse or near relative who is battling with cancer, experts say 1 out of 3 will have cancer of some form in their lifetime.
Nan is doing her very best with her current situation. As I see things she is pretty much on hold with growing tumors, she cannot walk on her own, she cannot eat, she has intense pain most of the time when awake, she is using a lot of pain meds to dull the pain which lets her sleep and have some escape from the intense pain. She is very clear headed, still has her humor and it even has a bite to it at times, she sleeps from 2 to 3 hours and then needs more Dilautid which when handed the push, can do herself providing she does fall asleep with the meds only pushed half way in the picc line. I often find her with the IV push in her hand, fast asleep only to wake a bit and push a little bit more and then fall asleep again. She runs a temperature of 99 to 100 most of the time so we keep the bedroom and the family room cool with a fan moving the air at all times. She has a hard time sitting up straight due to the size and shape of the tumor. This week her left knee is causing lots of pain, other times it is thigh or lower back or side. Her blood is getting low enough that next week we will have a transfusion unless the hemoglobin improves. I think we are moving toward some infection in the urinary tract and have requested that blood and urine samples be taken, so far there has been no doctor follow thru on that request.
We will discuss the possibilities of using the drug, Nexavar, with the doctor on Friday. This drug is approved for kidney cancer but is being used off label for GIST with some pretty amazing results. We may end up with another of those huge bills because I doubt Blue Cross will look kindly to an off use of this drug. So as before we will take one step at a time. I'm told that if it is going to help it does so rather rapidly. AMN has never been known for shrinkage, just stability but Nexavar is shrinking tumors for GIST patients who like Nan were out of other options. So we move forward one day at a time. I am coping fairly well with the challenges we face. We were up many times last night but I compensate by staying in bed and sleeping until about 7:30, I used to get up at 6 to start work but it makes no sense to do that and fall asleep in the chair or behind the wheel due to lack of sleep. We have our routines down pretty well.
Just now Nan let out a whoop, I ran in knowing that she had spilled water on her chest, it happens with some regularity as she falls asleep with a heavy cup in her hand and gravity takes over. This time her hand slipped and it was hot water that she felt, she is OK and we both had a good laught about it. Said she planned to change her gown tonight anyway!
Our new person arrived promptly at 10 this morning. The first impressions were a bit stiff and formal but she is working out to be a very nice and caring person. She does like to have dogs run the house so she and Starr clashed a bit all day. She has the counters clean, the floors clean, the dishwasher unloaded, Nan perfectly cared for and safe. She lives in Stockton so has to drive the dreaded levee roads to reach us but we like her. I don't know her name, tough to pronouce so she has us call her Bean.

Well its time to let you go about your business, I've bent your ear, eyes too long. We are continuing to hold tight to the Lord's hand seeking His help and guidance. It is extremely hard to understand what Nan is having to go through right now, why this is neccessary.

We send our love, our appreciation and we sure look forward to s o m e o n e coming to visit soon. This house is too quiet without friends and family here!


tim and nan